I’m Lucky to be my Husband’s Full-Time Caregiver

I see my husband Gerry as the same charming and robustly healthy man I married 36 years ago.

But, diagnosed in 2008 at 79 with Lewy Body Dementia, a horrid degenerative affliction, he’s been ravaged. Tiny, just over 100 pounds, even the smallest wheelchair threatens to engulf him. In a T-shirt you can see his little stick arms and often he lists to the left, his hand hanging to the side, seeming to reach for something elusive.

Gently, carefully, I pick up his hand. The feel of his papery skin, the texture of dried egg white, reminds me that he can get a cut almost from a whispered contact with any hard surface. Yet, as I kiss the top of his head and hug him from behind, I think of him as the same happy person who married me in his off-white suit straight out of Saturday Night Fever, ready to enjoy life.

I want us to be able to go for a latte, to have a real conversation, maybe even have sex.

Is this true? I have to guess. He doesn’t talk much and not often clearly. But when I put my lips on his neck and nuzzle his ear, I know he’s still my Gerry, he’s there. He smells like himself, the croaky whispers are his voice and he’ll grab my hand. He’ll say “Hi Babes” and a smile will come out like the sun. Of course he’s happy!

I’ve been Gerry’s caregiver for six years, and while the day of the diagnosis was hard, the worst was later, when I realized that the things we loved and shared, from gossiping about our friends to going skiing, proudly making and eating boeuf bourguignon and playing tennis were being siphoned off from our lives. Most difficult to accept was the loss of my buddy, the person to whom I told everything, who would laugh at things with me and discuss my weight. He used to read the articles I wrote and make comments. Who would be my proofreader now?

These days at 5 a.m. on any given morning, I’m in a nice place, warm and happy, and bells from the village square are ringing. Oops, no, that’s my iPod alarm. Time to change Gerry’s diaper and head to the gym — maybe I’ll bike. I love to work out and chat, focused on fun. I’m back in time to start our day before he wakes, a cheerful wife at breakfast. He’ll let me know with a hand squeeze that he feels good too.

I decided right from day one, that I would never desert Gerry and he would be with me at home no matter what, but that doesn’t mean it’s easy.

Days can be endless and this is a 24/7, 365 days a year job. Doing some exercises or playing with a poofy ball one on one absorbs just minutes. Anything passive like TV brings on the sideways listing. Here we are — it’s maybe 10 a.m. and we’ve done leg lifts and arm lifts. We’ve chair danced to Bruno Mars and had some ball play but there are hours before it’s even lunchtime.